Halloween was a few days ago. It’s an event I ignore. It didn’t exist in Aotearoa when I was growing up and personally I’d be happy if it remained so today. Thankfully, our current home has not been visited for Trick or Treating since we moved here 16 years ago. Perhaps it’s the unlit, tree lined zig-zag path that leads to the front door that puts kids off. Whatever the reason, it means I don’t have to pretend that Halloween is fun.
Halloween has brought up the topic of how folk with aphantasia (the inability to visualise mental images), such as myself, react to scary stories. Apparently we don’t. It might explain why I had no interest in sharing scary stories as a child. According to a Royal Society Publishing article the fear induced while reading or hearing a scary story relies on being able to create a mental image of the situation/event being described. No image, no fear.
The study measured skin conductivity of subjects while being presented with a scary or frightening story such as being in an aircraft as it crashed, or being trapped in a room full of spiders that then begin crawling over you. It’s well established that strong emotions are linked to skin moisture – the stronger the emotion, the wetter the skin becomes, lowering its electrical resistance. The control group showed significant increases in skin conductivity during the presentation of the scary stories but the aphantasiacs “flatlined” showing no change in emotions.
To check whether aphantasiacs lacked emotional responses, subjects were also presented with scary images. Both the control group and those with aphantasia showed identical responses. The study indicates the there is a close relationship between visual imagery and emotions. Both the control group and aphantasiacs presented the same emotional reactions when presented with real images, but only the control group did so when no images were presented as they were able to create the mental image of the story whereas those with aphantasia could not.
Around 2% – 5% of the general population have aphantasia, while it’s estimated that 20% – 30% of autistics are also aphantasiacs. Most people with Aphantasia don’t realise that they have it unless they are tested specifically for it. I only discovered I have aphantasia in my mid 60s – around six or seven years ago. It might go someway to explain why I have difficulty identifying faces –even of those nearest and dearest to me. Perhaps it might also explain why I find little to no attachment to fictional situations, but slightly more so when I see it on a TV or movie screen.
Aphantasia is another one of those neurological differences where those with the condition are frequently described as suffering with/from the condition, in much the way autistics are often described as suffering from autism. If you are guilty of this, just stop it! Neither autism nor aphantasia cause suffering in and of themselves. Any suffering comes from how others disbelieve, devalue, ignore and gaslight the experiences of those with these conditions, and worse when we are punished because others perceive our responses to our experiences as being wrong.
Yenn has some very good points about how ableists treat people with disabilities – often in ways that are infantilising insulting or demeaning. I don’t view myself as disabled, but there are certainly times when society effectively disables me. Unfortunately many fully-abled people don’t realise how ableist their words and actions can be…
I recently had an unpleasant experience where a person gave me a hard time for using the accessible seat on the bus. I need to have two seats to myself due to sensory and proximity issues related to my autism. Apparently – according to this person – I didn’t ‘look disabled enough’ to use this […]
I am autistic, and over the 12 or so years since I discovered the truth about myself, I have come to the position where I can state that not only I am autistic but that I am proudly autistic – I am an Autist. After first coming to terms with my neurology, I have gradually become more and more aware of how autistic people are treated worldwide – Abysmally, and often horrifyingly. Treatment such as the administration of powerful electric shocks that are deemed inhumane when applied to animals, terrorists or criminals is, apparently okay when applied to autistic people, and in some places permitted by law! This includes the state of Massachusetts in the USA, where the Judge Rotenberg Center (JRC) subjects disabled and/or autistic children and adults to GED electric shock “treatment”.
Trigger Warning: description of abuse and torture. Read the terrifying experience of one JRC survivor on Aspiesforfreedom’s Blog
The Judge Rotenberg Center (JRC, founded in 1971 as the Behavior Research Institute) is an institution in Canton, Massachusetts, United States, housing people with developmental disabilities, emotional disorders, and autistic-like behaviors. The center has been condemned for torture by the United Nations Special Rapporteur on Torture. The JRC is known for its use of the graduated electronic decelerator (GED), a device that administers electric shocks to residents through a remote control. The device was designed by Matthew Israel, the institute’s founder.[1] While the FDA issued a formal ban on the GED in 2020, the device continued to be used on some residents pending an administrative stay for the duration of the COVID-19 pandemic.[2] In July 2021, the D.C. Circuit Court of Appeals ruled that the FDA could not issue a “partial stay” but must issue a blanket ban or no ban at all, thus allowing the JRC to continue subjecting 55 people to shock in the meantime.
The article linked to below deserves to be read by every human rights advocate, especially in light of the attempt to stifle the voice of criticism by the very people who are affected the most – Autistic people.
For decades, the Judge Rotenberg Center (JRC) in Canton, Massachusetts, has been using graduated electronic decelerators (GEDs) to shape the behaviors of children and adults. The GED delivers a powerful and extremely painful electroshock and is worn by students 24 hours per day, every day— even during sleep and showers. The GED looks like a…
It’s still (just) April in parts of the western hemisphere and I’ve only just now stumbled across this (in my opinion) well written article, so I have no hesitation in reblogging it at this point in time. Anna writes what I have felt for some time but have been unable to put my thoughts together on this matter. Thank you Anna for explaining what I feel deeply.
It is, thankfully, nearly the end of another month with Aprilness. Another Autism Awareness Month – or as the ever-so-slightly-more enlightened have started to call it, Autism Acceptance Month. These are not labels chosen by the Autistic community (and I use a capital A here intentionally). This month of awareness- or acceptance-raising isn’t something any of us asked for.
Trigger warning: <sarcasm> this article may irritate some people who lack empathy. </sarcasm>
Today in the comments section of a post of one of my favourite bloggers was a comment by one reader that they were irritated by trigger warnings that occasionally precede online articles. The reader made the comment that “[E]verybody needs to put on their big boy/big girl panties and deal with it“. This to me seems to be very inconsiderate, lacking in empathy, and downright harmful. It triggered prompted me into composing this article. Let me elaborate.
Personally, I approve of trigger warnings. They are not there for the benefit of the typical reader/viewer. They are there for the benefit the reader/viewer whose circumstances are less than typical.
Many people struggle with life for a variety of reasons, beit temporary, medium term or for their entire life. Some people will, from time to time encounter that proverbial straw that breaks the camel’s back causing anguish, despair, a breakdown, a relapse, or even contemplating whether or not life is worth the struggle. I cannot know the circumstances of my readers so I shouldn’t presume that none of them are facing difficulties that are stretching them to breaking point. I would not want to be knowingly responsible for loading them up with that proverbial straw, at least without giving them the opportunity to decline it. I’ll attempt an analogy.
Imagine you come across a cafe you haven’t seen before and decide to go in for a Flat White (or whatever your favourite hot beverage is). You’re about to take your first sip when there’s an extremely loud bang that startles you and you spill some coffee onto your lap. After you recover you notice no one else in the cafe has reacted as you did. It turns out this particular cafe fires a cannon on the hour throughout the business day, and regulars are aware of this. On the other hand you weren’t. If you had been warned before purchasing your coffee, you would have been forewarned and could have chosen whether to stay or go elsewhere.
Which would be more reasonable: (a) to provide a warning at the entrance, or on the drinks menu on the wall that a cannon is fired on the hour, or (b) to be told that you need to put on your big boy/big girl panties and deal with it when you complain that the cannon fire caused you to spill your coffee?
What triggers me about comments such as “deal with it” is that it’s a situation I find myself in regularly. I’m autistic and my ability to communicate in a way that non-autistics demand is not always successful. I can communicate perfectly well – with other autistics or with people who are prepared to meet me part way. Communication is a two way street, yet I, and other autistics, must bend over backwards to conform to the confusing, chaotic and illogical communication style of non-autistic people. All. The. Time.
It’s uncomfortable, unpleasant and exhausting, and frequently in social situations I find it necessary to escape, at least temporarily, to avoid shutting down. Such escapes are often considered rude, anti-social, inconsiderate or arrogant, and when I explain why it’s necessary I’m informed that no one else has a problem and I need to learn to “deal with it”. Why is it that they don’t ever need to learn to “deal with it” – the fact that I need to take frequent breaks during social activity?
Seldom, if ever, is there an attempt by neurotypicals to make any accommodation for the needs of autistics. Who’s lacking empathy? According to popular mythology, including much of the medical profession, autistic people lack empathy. I would argue no more so than non-autistic people do. In fact there is a growing body of evidence that suggests autistics may actually be highly empathetic, but expressed in a way non-autistic people can’t even recognise, let alone understand.
When needs are not met, people suffer. If you are irritated when empathetic people try to accommodate the needs of others by way of trigger warnings, you’ll not get any sympathy from me.
Back in the late 1960s I was a young adult, still in my late teens, but unlike most of my peers I had no friends or social life – in fact I found interaction with typical teens and young adults perplexing and at times terrifying. I had no dreams or aspirations, but no regrets or fears either. I simply existed. My life was quite empty.
In hindsight, this seems to be to fate of many young autistic males, although it would take more than another forty years before I was to discover that I am autistic. I wasn’t unhappy, but being a social outcast, and knowing one is but not knowing why did create a longing that I vaguely felt somewhere within.
I have quite high levels of alexithymia and aphantasia. I lack an awareness of emotions in others and myself, and I am unable to conjure images in my mind. This is where music comes in. Some music causes me to feel what I assume to be emotions. Occasionally music may stimulate a vague mental image. Very rarely a piece of music may do both. This cover version of Mr Tambourine Man by Melanie (Safka) is one such piece.
I’m not sure exactly when the cover version of Mr Tambourine Man by The Byrds landed on the hit parade, but I guess it was around 1965 or 1966. I had no interest in it at the time, and still don’t. Then at the end of 1968 Melanie released her cover version on her album Born To Be. I definitely took notice of that version. I could feel the hair in the back of my neck rise, especially as she sings the last verse starting from “And take me disappearing through the smoke rings of my mind“,
It’s an imagery I can actually see, albeit as a black silhouette on a misty grey background or perhaps as a monochrome sand painting or perhaps as a slightly abstract pen and ink drawing. It’s difficult to describe as I can only see it while the song is being played. I can see the frozen leaves and the haunted frightened trees. I even sense the fear of those trees.
When I first heard Melanie sing the words “With all memory and fate driven deep beneath the waves let me forget about today until tomorrow“, I felt an instant connection. Perhaps I was a recognition that my life at that time was one of near solitude and I needed more. Whatever it was, there was a connection to the song and the singer in a way that I had never felt before. And still today, more than fifty years later, Melanie’s version of this Bob Dylan song moves me like no other does.
Enjoy!
Mr. Tambourine Man, sung by Melanie, composed by Bob Dylan
Lyrics to Mr Tambourine man composed by Bob Dylan
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
Though I know that evening's empire has returned into sand
Vanished from my hand
Left me blindly here to stand
But still not sleeping
My weariness amazes me, I'm branded on my feet
I have no one to meet
And the ancient empty street's too dead for dreaming
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
Take me on a trip upon your magic swirlin' ship
My senses have been stripped
My hands can't feel to grip
My toes too numb to step
Wait only for my boot heels to be wanderin'
I'm ready to go anywhere
I'm ready for to fade
Into my own parade
Cast your dancing spell my way
I promise to go under it
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
Though you might hear laughin', spinnin' swingin' madly across the sun
It's not aimed at anyone
It's just escapin' on the run
And but for the sky there are no fences facin'
And if you hear vague traces of skippin' reels of rhyme
To your tambourine in time
It's just a ragged clown behind
I wouldn't pay it any mind
It's just a shadow you're seein' that he's chasing
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
And take me disappearing through the smoke rings of my mind
Down the foggy ruins of time
Far past the frozen leaves
The haunted, frightened trees
Out to the windy beach
Far from the twisted reach
Of crazy sorrow
Yes, to dance beneath the diamond sky with one hand waving free
Silhouetted by the sea
Circled by the circus sands
With all memory and fate
Driven deep beneath the waves
Let me forget about today
Until tomorrow
Hey! Mr. Tambourine Man, play a song for me
I'm not sleepy and there is no place I'm going to
Hey! Mr. Tambourine Man, play a song for me
In the jingle jangle morning I'll come followin' you
While most of my readers have been living under various forms of covid-19 restrictions for upwards of eighteen months, for us Kiwis in Aotearoa New Zealand, and especially outside of Auckland it is a novel experience. Social distancing and masks have not been everyday parts of our lives until around 2 months ago when the delta variant finally succeeded in breaching our border security measures and is proving impossible to eradicate, unlike previous variants.
Mask wearing is now mandatory for people aged 12 and over when taking public transport or visiting businesses, and recommended when away from one’s home or “social bubble”. Personally, apart from yet being unable to find a means to avoid the fogging of my glasses, I find my stress level definitely rises to the point where it can’t be ignored after about 30 minutes of continuous mask wearing, and I need to remove it, even if only for a minute, to restore myself to something resembling normalcy. I can usually achieve that by retiring to the car or finding an out of the way park seat or equivalent where the mask can be briefly removed in safety.
However, that’s not the most serious downside to mask wearing. I have always had impaired hearing. I was diagnosed as having 70%-90% hearing loss when I was around 7 or 8. Normally I can get by reasonably well, and when a word or two can’t be clearly recognised, I can usually deduce it by context. It’s only just in the past week that it has really dawned on me how reliant I am on lip reading as an essential component of my ability to understand the spoken word.
I’ve recently had several occasions where it has been necessary to converse with a shop assistant while making a purchase. In one case it was a quiet environment but I was unable to recognise even half the words spoken by the assistant. Often I was unable to understand even the gist of what he said. By the end of the transaction I suspect he was just as frustrated as I was about the slow progress of our conversation. I found the entire process embarrassing and somewhat humiliating.
Later in the week, I visited a somewhat noiser shop where I had gone to pick up some items I had bought and paid for online. Sure I could have had them delivered, but the delivery would have cost more than the products. I’m not a penny pincher, but we do have a fixed and somewhat limited budget to live on. In theory I should have been in and out of the shop inside of a minute, but it was not to be. It didn’t help that the online instructions for collecting online purchases were incorrect for the local branch. In fact it may have been less confusing if there had been no instructions at all.
After waiting at the counter under a sign reading “Collect online purchases here” and seemingly being ignored, I sought out a shop assistant and explained why I was there. To cut a long story short, it took over half an hour to collect my purchase and only then because I finally resorted to seeking yes or no replies or asking them to point or make a specific gesture order for them to communicate with me. At no time did it occur to them to initiate non-spoken communication. I found I had to give specific instructions. Even when I discovered that where I was waiting for my pickup is no longer applicable, and then asking where I should go, no one thought to point in the appropriate direction until I specifically asked them to point with their arm/hand/finger in which direction I should go.
I’m not sure what sort of privileged lives the young people working in that shop have “endured”, but it was apparent to me that they wouldn’t understand the irony of directing a wheelchair bound person to take the stairs to a different floor or instructing a blind person to read a sign painted on the wall. I would have thought that people with disabilities are encountered often enough that most non-disabled folk would have some level of understanding or empathy. Apparently not.
Come to think of it, while I don’t consider being autistic as being disabled, some of the hyposensitivities and hypersensitivities that result from being autistic can be made disabling by a lack of empathy, and sometimes by antagonism in the 99% of the population who are neurotypical. So in hindsight I really shouldn’t be surprised by the lack of understanding or empathy I have received over the past week or so due to no longer being able to augment spoken conversation by lip reading.
Perhaps I am on more common ground with neurotypicals when it come to reading facial expressions of those who are masked. I’ve heard and read many complaints about how much more likely it is to misunderstand someone or be misunderstood when masks cover so much of the face. I’ve queried a few acquaintances about this, and they tell me that it does reduce the amount of non-verbal communication they receive. The amount of perceived loss seems to vary considerably. When pressed, it’s varied from “some” to “heaps” (a lot).
Most people don’t think about how much body language and facial expressions contribute to spoken communication until it’s brought to their attention or they find it missing from others or they realise their own intentions are not always fully understood. The necessity to wear masks is bringing the significance of non-verbal forms of communication to the attention of some of the more socially aware folk.
My own (admittedly very anecdotal) investigation suggests that people rely on the eyes as much, if not more, than other facial expressions. So while a mask can reduce the amount of non-verbal information received, it doesn’t eliminate it. If anyone has tried the Mind in the eye test, they will realise how much most people can read from looking at the eyes alone. So spare a moment to consider the situation I now find myself in.
I do very poorly when reading facial expressions. I can recognise a few basic facial expressions, but if I rely solely on the eyes I’m lost. The average for adults taking the Mind in the eye test is 26 out of a possible score of 36, but varies from 17 to 35. Women average slightly higher than men. For autistics, the average is 22. I’ve tried the test many times, and the best I have ever done is 17 out of the possible score of 36. Typically I hover around the score that might result from random selection – a one in four chance of getting the correct answer for any given question – 9 out of 36. In other words, I haven’t a clue how to read eyes.
It is becoming clear to me that what emotions I can read from the face depend almost entirely on the mouth and now that they are effectively hidden behind masks, I am blind to emotions being expressed unless someone describes their emotion(s) in words. I’m really not sure how I can effectively remedy the the losses I now realise I am faced with, as I don’t see the likelihood of masks being done away with for some considerable time, if at all.
I’ve spent seventy years learning how to limit social faux pas, and more importantly, how to recognise them when they occur so that I can take remedial action. I can foresee that mask wearing will set me back decades. Perhaps it’s time I seriously thought about becoming a hermit as a full time occupation.
As someone who belongs to a distinct minority that has been pathologised as being “broken” more so than accepted as different but equal, the post below speaks very much to my condition (Quakerspeak for “my experience is very similar’). Thank you gracenotes17 for your contribution to this very important topic.
I have often heard people say that it’s important to be able to voice your opinion and disagree with others’ without being accused of hate speech. To an extent, I agree. I think everyone has a right to voice their opinion, and when people are able to do so respectfully, it can be an opportunity […]
Sometimes being neurodivergent is frustrating. Take today for example. Over on another blog, a discussion developed between the blogger and myself over my relationship with Quakerism. Either I failed to understand what he/she was conveying, or he/she failed to understand what I was saying, but clearly we were talking past each other. No matter how carefully I tried to clarify what I was saying, the worse the situation became.
The blogger’s stance was that Quakerism is founded on Christianity, aka no Christianity, no Quakerism. Therefore only Christians can be Quakers. I attempted it illustrate how, although it has Christian roots, a group, with no creed or dogma, that believes that Truth grows and changes in the light of new knowledge, and where individuals are encouraged to find their own truths, will over time, hold views that might not be consistent with the beliefs of the founders. And today there are many non-Christians who are Quakers. Time after time, the blogger would reply as though I didn’t understand that Quakerism has its roots in Christianity and I’m an the most incredibly stupid and obtuse person he/she has encountered and then proceed to tell me again that Quakerism is founded on Christianity.
The topic of the argument is really irrelevant but it does illustrate how frustrated, and at times abusive, a person can get when miscommunication occurs. Being neurodivergent I find communicating with neurotypical people complicated and difficult at the best of times, and as neurotypicals make up around 98% of the population, it results in a lot of frustration. It can be hurtful too. There’s only so many times one can ignore comments such as “How many hours does it take for you to get out of bed and figure out how to put your pants on in the morning!?!?” before one begins to question one’s worth.
That blogger probably communicates almost exclusively with neurotypicals just as I do. I wonder how he/she would cope having to communicate almost exclusively with neurodivergent people in the way I have to communicate almost exclusively with neurotypicals – especially if he/she is frequently told how much of an idiot he/she is.
As an Aspie I have difficulty recognising if language is being used literally or figuratively. At age 67 I now have a complex and rich set of rules I can apply in determining whether something is literal or figurative, and these days it serves me reasonably well. But it’s still just a set of rules, and at times there isn’t a rule that covers a particular set of circumstances. This is especially so where a phrase or sentence has a lot of social or religious baggage associated with it and means different things to different people.
It was my attempt to explain this that brought up the pants in the morning comment. I’d like to say that such a response is unusual, but unfortunately I can’t. Too often it’s an excuse for yet another put down. In reply to the pants comment, I was tempted to say that sometimes I can take a very long time to figure out how to put my pants on. But I suspect that even if I explained that it would be due to a migraine attack affecting cognitive and motor skills, I somehow doubt the significance of his/her comment would sink in. As it turns out, the blogger has dedicated a post specifically to me and my apparent inability to communicate. Such is life.
For all you neurotypical people out there, next time you happen to encounter someone who seems a little different, consider that he/she has to spend all day making accommodations for people like you. Is it too much too ask that you spend a few minutes of your day to try and accommodate them?
Another Spectrum 
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